Last night the medical supply company that will handle Fiona's treatment supplies and send the training nurse to us called. The rep assigned to us introduced herself and told me about her son. He had a bone marrow transplant for a severe combined immune deficiency when he was 5 months old. He's a freshman in college now. She was a great source of information. She gave me her cell phone number so I could call if I ever had questions or needed to talk. It was amazing to me that someone who has been through what we're going through was assigned to us. I can learn a lot about Fiona's condition, treatment, prognosis, etc, but I need to know about the experience, from a real person, who can understand where I am. She's been where I am.
Today I watched the video about Fiona's new treatment. I know I can do this, and I felt prepared to do it until I realized that every week I have to stick two needles into my baby. It was easy to hold her hand and comfort her while someone else was the mean person hurting her. Now I have to be that person. Ouch!
Here's a link to the super boring video about at home treatment. http://m.youtube.com/watch?v=u4mw5V-q_A4&desktop_uri=%2Fwatch%3Fv%3Du4mw5V-q_A4